Tuesday, April 24, 2012

Dean Andrews, 20, has told of his life with progeria, a rare ageing disease

I'm aged just 20... but have the body of a 160-year-old man

# Dean has progeria, which means his body ages eight times faster than normal
# He says: 'I've never let the condition hold me back'

Europe’s oldest sufferer of a rare ageing disease has told how in just 20 years his body has become that of a 160-year-old.

Dean Andrews' body has aged eight times faster than normal due to a rare condition called Hutchinson-Gilford progeria.

He is one of just four progeria sufferers in the UK and out of only 74 cases worldwide, Dean is thought to be the second oldest survivor.

Now Dean has decided to tell the story of his life so far in the hope of providing inspiration to other sufferers.

He said: 'I’ve never let my condition hold me back. I’ve always tried to do what everyone else does and even if I failed, at least I tried.

'My family have kept me going and I’ve got very supportive friends. I’m very lucky as they do everything they can to make me happy.'

Dean weighs just 3st 10lbs - but his small body holds a big personality.

In his 20 years, Dean has learnt to drive, been engaged, got four tattoos and once even started a mechanics course at college. However, he was forced to quit when he was unable to get his tiny 4ft 1in frame over the cars’ bonnets.

Dean with his mother Dawn Thomas, 41, and her husband Wayne, 43

Nevertheless, his achievements are astounding considering that when he was diagnosed with progeria at the age of seven, his mother Dawn Thomas, 41, was told he would not live beyond his early teens.

Back then, the condition was so poorly documented that most doctors had never even heard of it.

Dawn said: 'When Dean was about six months old I noticed he was a lot smaller than he should have been. He was still wearing clothes for a 0-3-month-old baby but the health visitors told me not to worry.

'They said he was just small and there was nothing wrong with him but I carried on taking him to the doctor regularly because his appetite was small.'

In other ways Dean’s development was quite normal, but when he started walking at the age of 18 months, Dawn noticed that he would tire more easily than her other children

Dawn said: 'We would be walking along the street and he would complain that his legs were hurting. At first I just thought he was lazy but then I noticed there were certain things he couldn’t do, like cross his legs during assembly at school.'

The mystery was eventually explained when a geneticist broke the news that he had progeria.

Dawn said: 'The day before we were told, the doctor rang up and told us to come in and said that I should bring someone with me. I knew then that it was bad. I thought it might even be cancer because his hair used to fall out so easily.

'There was so little information available about progeria at that time that I basically had to teach myself everything. All we were told was that Dean was ageing eight times faster than normal and that he would probably not live past 13.

'I didn’t know how to break it to Dean at that time because he was so young. I just told him that he had a growth problem.

'It was really hard to take and I ended up on anti-depressants but it was Dean himself who gave me hope, he never let anything get him down.'

Dawn lives in Birmingham with Dean, her husband Wayne, 43, and children Sophie, 15, and Lewis, 12. She also has an older son Nathan, 23, a warehouse assistant, and fosters her niece Annabel Timby, 14.

She split with Dean’s father Mark Andrews, at that time an airport baggage handler, in 1998 and met Wayne around the time of her son’s crushing diagnosis.

Now both Dawn and Wayne devote their lives to Dean’s full-time care at their council terrace home in Erdington.

She said: 'We have just tried to make every moment count for him as best we could. I’ve never tried to treat him any differently or tell him that he couldn’t do something, if he wanted to try something he would have a go.'

Dean said: 'When I was at primary school I wasn’t really aware that there was anything different about me.

'I only really became aware of my condition when I was about 13 and it was decided that I should go to a special school.'

Progeria causes rapid ageing and sufferers of the genetic disease are prone to arthritis, eye problems, heart disease and baldness.

By the age of 10, most progeria children look like octogenerians. They are said to age at eight times the normal rate, meaning Dean has survived the equivalent of 160 years of ageing.

Dean’s poor prognosis meant doctors expected him to be profoundly disabled before he hit his teens, so Dawn and Wayne decided to send him to special school where the facilities were adapted for wheelchairs.

However, Dean defied medics’ grim predictions and excelled at school, helping his teachers with the other students’ needs and taking part in plenty of after-school activities.

Dean added: 'I had a lot of friends at school and I took part in a lot of after-school clubs. I also did swimming competitions and we went on trips.

'The only time it ever bothered me were when my friends wanted to go theme parks, which I loved, but I was not tall enough to go on most of the rides so I would just stay at home.

'I loved hockey and skateboarding and riding my bike - all the same things as other teenagers.

'I also loved playing football and even though some of the other kids were a bit taller than me, I never let it hold me back.'

Dawn was wary of letting doctors use her son as a guinea pig for untested treatments. She did not want him to receive hormone treatment to kickstart his growth and, at the age of 14, Dean himself refused invasive surgery to correct his jaw.

Apart from an operation to repair damage caused by frequent ear infections, Dean’s health was relatively good all through his teenage years and he amazed doctors with his progress.

He said: 'When I got to about 15, I noticed that I couldn’t lift my legs high enough to peddle my bike anymore but I just rode my little sister’s one instead.

'My friends all had mini-motorbikes around that time too and I struggled to sit comfortably on one. But I still had a go at everything from quad biking to skateboarding.

Dean aged 13, being lifted by models at Max Power car show

'If my mate jumped over a wall I would be there right behind him, trying to scramble over it.'

A Birmingham City fan his whole life, Dean was named the club’s disabled supporter of the year and presented with an award by Emile Heskey in 2005.

As a fan of fast cars, Dean began driving lessons at 17 and passed his test first time. He then found love with a girl named Emily, who would later become his fiancee, although sadly the relationship ended earlier this year.

Dean was living life to the full, but then in November last year tragedy struck.

After suffering frequent breathlessness Dean was admitted to hospital with suspected pneumonia. But when doctors investigated, they found he was suffering from irreversible heart failure.

He now spends most of his days at home where Dawn tends to his every need.

Doctors cannot say how much longer he has left and he must take a cocktail of medications every day. Nevertheless, Dean remains characteristically upbeat.

He said: 'I went to the progeria reunion last year and met Hayley Okines, Harry Crowther and Ashanti Smith - the other three sufferers in the UK. It was great to be able to show them what I’ve done with my life and to give them a bit of inspiration.

'Heart failure has changed my life a lot and I can’t do a lot of the things that I used to, but I have my family and friends around me and they keep me going.

After suffering frequent breathlessness Dean was admitted to hospital with suspected pneumonia. But when doctors investigated, they found he was suffering from irreversible heart failure.

He now spends most of his days at home where Dawn tends to his every need.

Doctors cannot say how much longer he has left and he must take a cocktail of medications every day. Nevertheless, Dean remains characteristically upbeat.

He said: 'I went to the progeria reunion last year and met Hayley Okines, Harry Crowther and Ashanti Smith - the other three sufferers in the UK. It was great to be able to show them what I’ve done with my life and to give them a bit of inspiration.

'Heart failure has changed my life a lot and I can’t do a lot of the things that I used to, but I have my family and friends around me and they keep me going.

'There’s nothing they would not do for me and I’m very lucky to be so loved.'

Dean says there are some things he would like to do in the time he has left. He would love to meet his idol comedian Leigh Francis - known for his character Keith Lemon - and he hopes to make it to the next progeria reunion in September, which takes place in Italy.

These days, he loves nothing more than relaxing in a jacuzzi to soothe his swollen limbs - a side affect of the heart failure - but the NHS withdrew his hydrotherapy funding last year. He is currently trying to find somewhere local that will allow him to use their facilities.

Dawn said: 'We are so proud of Dean and everything that he has achieved but I also feel he has missed out on so much.

'Now we are just trying to make the time he has left as comfortable and as happy for him as possible.'